A return to dry eye hell, but light on the horizon

[Roderick]

From 2003 onward, I started having a lot of inflammation of the eyes and ears. The cause was eventually found to be a prolactinoma, and I was given a drug called Dostinex to treat it. The prolactin hormone in my body was abnormally high, and the drug acts on the receptors for the hormone to reduce it. Eventually, my eye and ear symptoms were lowered by 90%, to a much more livable state. The adenoma (micro-tumor) is non-malignant, and eventually shrinked to an almost negligible level.

Then in 2009, while I was studying in college, I started feeling a lot of inner eyelid pain again. After a few months, it began to be very difficult to read (while I was going through my final!), to play a videogame, to watch video, and it was painful to simply browse the Web. That is when I started seeking solutions and found this site. I then tried various drops and other methods, most of whom gave me some relief, but not really making any significant difference.

I tried to find help, but when I finally met an ophtalmologist, I was treated in a very cold, dismissive manner. I was so insulted that I decided to go to the US to see Dr. Latkany, which happened in August 2010. At that point, Dr. Latkany thought my issue was due to either allergies or the medication I was taking. He also advised me not to express my glands, or to use any eye drops, saying that "putting chemicals in my eyes ill only make it worse".

Eventually, I discovered that the cause was simply that I hadn't taken my Dostinex medication as regularly as I started college. I resumed taking it regularly, and my symptoms again began to diminish. After a few months, the inflammation had dropped significantly, and a little later I was able to do all that I did before, while feeling significantly less pain.

It turns out that when there is too much prolactin in the body, our testosterone, which from my understanding is essential to tear secretion and the functioning of our meibomian glands, is inhibited. This was undoubtedly the source of my issues.

Later, in 2012, we discovered that my growth hormone was starting to get abnormally high. This is actually common with prolactinomas, as sometimes the adenoma will start secreting too much growth hormone along with prolactin. Eventually, I started taking injections to normalize the growth hormone, and it seemed to do fine.

However, this winter, we discovered that my testosterone was down to very low levels. Not below the "normal range", but at the absolute bottom of it. At that point, I was offered to start testosterone injections, but turned it down since I didn't feel I really had symptoms.

Then last spring, I quickly started having heavy, crippling eye pain again.

Immediately, I saw a link, and thought my symptoms were due to the testosterone issues, which seem to be deeply interlinked with dry eye issues in my case. After seeing my endocrinologist again, he said he had been at a conference where he heard a speaker say that in cases of growth-hormone secreting adenomas, when the GH wasn't controlled sufficiently, it often affected testosterone secretion, because it inhibited one of the cofactors involved in its production. It had been about 8-9 months where my initial dose of medication hadn't been quite sufficient to regulate the growth hormone (well, you actually look at the IGF-1 to see if the growth hormone is inhibited correctly, and the IGF-1 wasn't catrastrophically high as it used to be, but still too high).

We started taking a higher dose of the injection medication, but it didn't make that significant a difference.

I was still in pain and not knowing what to do. I remembered Dr. Latkany's advice to avoid chemicals at all, but I was at a point where I couldn't go out without feeling considerable pain to my eyelids.

I ended up going to an optometrist clinic specialized in dry eye (I found out that there were now a lot of eye clinics that took dry eye considerably more seriously than they did only seven years ago, when I had to travel to the US to find someone who knew what he was talking about). They used a Lipiview machine to diagnose that I had reduced tear production. I was offered the Lipiflow treatment, and after thinking about it for a while I decided to go with it, in order to attempt to find a better quality of life.

After I had received Lipiflow, I was given this regimen:

-Lotemax for 4 weeks
-Restasis for 1 year
-Lubricating eye drops 4 times a day
-Heating mask once a day

I started feeling slightly less pain, but it eventually dawned on me that it was doubtful it would resolve my issues on their own.

I was concerned with Lotemax due to it containing the BAK preservative, which I remembered very well from my days on this community, but since it helped soothe the eyelid pain I resolved to use lubricating eye drops before its application, and not to use it beyond 4 weeks.

Then after seeing my endocrinologist again, we found out that the IGF-1 was now in the normal range, but in the highest part of the range, and my testosterone was still very low. I then suggested to up the dose of the injections, which he agreed to.

I started this higher dose of injections 5 days ago, and finally it does seem to make a fantastic difference. I was instantly reminded of 2010, when I started taking my Dostinex more regularly. I could feel my eyes becoming a lot more moist, and my eyelids less painful. I could, for instance, use my laptop with a lot less pain on that very first day, and go out, come back to my apartment, without feeling a lot of discomfort.

Something else that impressed me was using the heating mask again. It seemed much, much more efficient with that higher dose, as if the oil in my eyes had been re-normalized, and the heating mask was much better at liquefying it.

So now I am enthusiastic again that I will be able to do all the things I enjoyed before, and once again get the pain down to an acceptable level.

Other things I tried include taking omega-3 fish oil, and green tea with lemon. Both of which gave me a bit more comfort, but again, it seems I really had to pinpoint the cause and address it directly, to make any significant difference.

Through the course of this, I tried many different kinds of lubricating eye drops. I remember in the days liking Dwelle very much, but obviously after all this time it ceased being produced.

I found out that any drop with a lipid-based ingredient were better at lubricating my eyes, but ultimately my eyelids found this lipid to be an irritant, as the blood vessels in my inner eyelids are extremely painful and stiff. I had often trouble just looking sideways because of this.

This included drops like Retaine MGD, and FreshKote.

Ultimately, I found out that the drop that disturbed these sensitive blood vessels the least, was the drop that they gave me at the eye clinic: I-drop pur, containing sodium hyaluronate.

I had seems comments on this forum saying that this drop hadn't worked very well for people, and that they had preferred Hylo, another drop with sodium hyaluronate, but after having tried it I found it gave me a small burning sensation.

I tried many drops and always came back to I-Drop Pur.

I'm about at the end of the four weeks of Lotemax use, and although I still find it soothing, the injections really do seem to be what makes my eyes work correctly again, and I also find them irritating to a point (probably due to the BAK), so I am glad to be ceasing it soon.

Restasis, fortunately, I have no trouble bearing it at all and do not find it irritating. I keep it in the refrigerator, like many people do, to lessen the "stinging" sensation, but I found it diminished a lot after a few weeks of use. Since I tolerate it well, and I have a great deal of inflammation of my eyelids, I decided to keep using it to see if it will help me recover faster.

[MGD1701]

Hi Roderick

Thanks for sharing.

Dr. Latkany: you mentioned, '' thought my issue was due to either allergies or the medication I was taking. He also advised me not to express my glands, or to use any eye drops, saying that "putting chemicals in my eyes ill only make it worse".
Why NOT to express glands and made it worse? What is that do with allergies/medication? I recently try to thin my oil and what I read is express a bit harder might help. Such issue is so confusing. Some doctors do NOT recommend massage, but most doctors recommend massage.

[Roderick]

I avoided lid cleaners so far because I had read that it dried out the eyes.

In 2017, after it resurged, I thought again about gland expression, but upon researching it I decided against it. These glands are fragile, so I do not want to manipulate them often, or empty their gland reserves. It is part of why I preferred to try out the Lipiflow treatment. Better, in my opinion, to receive one treatment, that ill unclog the glands very efficiently, the effect of which should last a relatively long while, than risk manipulating them every day and damaging them.

Goji berry, I remember trying years ago, but stopped due to it giving me diarrhea. I don't remember getting a radical difference.

As far as omega-3 goes, my best experiences were by far with triglyceride-based fish oil. It's just that in recent years, I never stopped taking omega-3 for these seven years, I simply switched to a cheaper one (from Costco, which does have good EPA/DHA content and low price). So I decided to simply switch back to triglyceride fish oil (Carlson's Liquid). They are simply preserved much better, and seem more efficient to me.

I'm not very impressed by things like "HydroEye". To me, this is just the pharmaceutical industry "wanting in" to the fish oil supplement industry, but ultimately they're selling the same stuff as most people do, except it is very overpriced. To me this is all a smokescreen, and I'm not going to be impressed by studies that they probably paid for themselves, and thus will be very biased.

I also didn't like gel-based drops (I tried Systane Gel and the gel version of I-Drop Pur). I don't think gel drops are good for those with severe posterior blepharitis. Because the blood vessels get very, very sensitive, and a gel-based drop will irritate these blood vessels more.

Lotemax I actually tolerated quite well, in spite of being a gel drop, but it is because it is a cortisone (anti-inflammatory) based drop.

[MGD1701]

Effective/safe Lid cleaners are the best way to tackle Blephartis/inflammation. Baby shampoo will dry out eyes

All doctors still ask me to do compress and massage, despite of the fact that I did LipiFlow once.
99% of time I feel great afterwards.

[Roderick]

I'm not quite sure about this. I think it depends on the source of your blepharitis. Blepharitis, from what I understand, really is a symptom of an underlying cause, of which there are many.

If your eyelid inflammation is not caused by external irritant stimulus, but rather by something wrong with your blood (such as an hormone), I don't think it's going to do much for you, and it might even be detrimental.

[PhoenixEyes]

If your eyelid inflammation is not caused by external irritant stimulus, but rather by something wrong with your blood (such as an hormone), I don't think it's going to do much for you, and it might even be detrimental.

There's a few who were found to have low levels of testosterone who then have had success with testosterone eyelid creams or even eye drops for their dry eye.

"Testosterone eye drops: A novel treatment for dry eye disease - November 15, 2015"
http://ophthalmologytimes.modernmedi...ry-eye-disease

Studies involving testosterone cream for dry eye:

http://www.aaopt.org/analysis-dry-ey...osterone-cream

http://www.aaopt.org/reduction-dry-e...hormone-creams

Possible side effects and advice to try and reduce the chance:

I saw a doctor in La Jolla who said if I use it that way to only use it a couple times a week to avoid any of the other issues that have been experienced (high cholesterol, acne, irritability, pore size). I developed a horrible facial acne and oily skin when I was doing it every day. What some people need is 1 to 2 clicks per day and I only need two clicks per week to get to the same hormone level in my blood. One last thing to consider is well, too much testosterone cream worsens rosacea. - DryEyeTalk group user

Positive testimonials I could find from the forum etc.

I went to many doctors and tried so many things. Medications, supplements, warm compresses, I wore goggles all the time, I put every imaginable drop in my eye. It is not completely gone, but here is the one thing that seemed to make the difference....hormones. It took a while to get a doctor to take me seriously, that hormones might be causing the problem. But finally one PA finally tested ALL of my hormones and I was WAY below normal on Testosterone and DHEA. I am a 55 year old female, and yes, we still need testosterone.

Anyway, I won't bore you with the combinations that I took along the way over the past 1-2 years, but this is what I am taking now. 10 mg of DHEA in the morning, some fairly strong bioidentical estrogen cream, bioidentical progesterone capsules at bedtime (200mg it also helps me sleep), and very strong testosterone cream which I rub into my eyelids. After doing the testosterone for several months my optician (who has been more help than ANY eye doctor I saw), pressed on my meibomian glands and was happy to report that OIL was coming out of them instead of the previous "toothpaste" he could express in previous exams. My eyes are not perfect, but it was the hormones that made my life good again. It also helped in my energy and focus and I feel happier than in previous years.

So, that is my story of success....hormones....simple, boring, non-patenable, somewhat inexpensive hormones (it costs me about $100 per month or less which is CHEAP compared to all the prescriptions and doctors and supplements I went through).

- 27-Apr-2017 dianeidaho

http://www.dryeyezone.com/talk/forum...602#post204602

I've been taking testosterone eye drops for five months. I get them compounded by a pharmacy in California. I had my last IPL treatment in February, and when the doctor did an expression of my glands, several of them were clogged, several them weren't working, and some of them were coming out like toothpaste. Now after using the testosterone drops, all of my glands are working, they aren't clogged, and only a few are coming out like toothpaste.

I didn't feel like it was working because my symptoms are generally the same, but after seeing the results in my glands I am impressed. I see Dr Gupta in Darien/lombard (chicago area) and he he best doctor I've had so far. The eye drops are .5 percent.

- 26-Oct-2012 Desi

http://www.dryeyezone.com/talk/forum...334#post125334

I got a prescription for 2% testosterone cream. I know some people use 5%, but my doc thought it best to try a lower amount first and see how it worked. I had it compounded by a pharmacy in California. They gave me a 30g jar for $40. Applying it twice a day, this jar will easily last me 6 months. One of the most economical treatments I have tried!

The first day it came in the mail, I applied it that night and applied it again the following morning. I could tell the difference that day. My eye was definitely moister. I am only using it on the left eye, as my right eye is double plugged and doesn’t need it. I have been using it for 5 weeks now. It is not a cure, but there is a noticeable difference. I no longer have those dry days, or dry periods during the day that I used to have. I can feel the difference….my eye is definitely moister.

I am in the group that is supposed to benefit most from this…..over 40 and female. I have heard that men and younger women do not always get relief using this cream. I did notice that my eye was sore the first few weeks when I started this. I don’t know what caused this, but it went away. A couple times in the evening, my eyes got very irritated. I noticed the irritation went away after a shower. I think that maybe some of the cream worked its way into my eyes and that is what caused the irritation. So now I apply it in the crease of the upper eyelid and under the eyebrow instead of close to the lashes. I also put a little dab under the eye.

I would definitely recommend trying this. It's economical, works fast, and is very easy to apply.

- 07-Mar-2005 jcorbett

http://www.dryeyezone.com/talk/forum...osterone-cream

Facebook Users (Closed Groups so not sure about posting names)

* I am using topical testosterone cream on my eyelids from a compounding pharmacy in California. Seems to help. Less dry. No side effects like that (high cholesterol, acne)...you use very little. I am highly sensitive to everything and did not have side effects. - 22 April 2017

* I have tried testosterone cream on my eyelids for dry eyes/ MGD. It helps. You have to see an up to date / modern endocrinologist. You must measure your testosterone level and should only try it if your levels are medium/low. - 2 June 2017

[Hokucat]

Putting testosterone cream near the eyelids was one of the many treatments I tried. I broke out with a rash around my eyes within a week, not related to the testosterone itself, but to the base lotion the compounding pharmacy used. So if you have sensitive skin like me, let the pharmacy know and they should have a different base they can use for sensitive skin.

Testosterone cream did not work for me, but it may have been because later I found out my glands were almost all blocked, many with scar tissue.

[Roderick]

I simply don't see, as I indeed have very low testosterone, why I wouldn't fix the testosterone deficiency in the blood, rather than taking drops of it to my eyes. Based on the higher dose of injections I started 6 days ago, it really seems to be working rather well, so I have the sense I must keep a normal rate of testosterone in my blood. Like one of the testimonials said, I feel testosterone drops are mainly useful for menopausal or post-menopausal women, who are the ones who will largely have little testosterone in their blood, which might cause severe dry eye issues depending on individual circumstance.

Not to mention that I live in Quebec, where everything is very controlled. I wouldn't have the ability to find someone who would actually prescribe me testosterone cream or drops.

I also have many other symptoms that seemed to be linked to testosterone deficiency and which are now improving: pain in the arms, deep feelings of lethargy, lack of energy, stomach soreness, ear pain...

If these injections to curb growth hormone, in the long run, fail to bring back a normal testosterone rate, then I will consider testosterone injections. However as of now, due to seeing a radical difference in my body in only days, I am optimistic.

[Hokucat]

Hi Roderick. Am glad your treatment is working well for you. Yes, we can all have different underlying conditions, so what works for one may not work for another. And even when people have the same underlying condition, there is often no one solution that works for all.

Often the only issue many people have is related to dry eyes, so using testosterone cream or drops limits the reach of the testosterone, which can have serious side effects, mainly (but not completely) to the eye area, especially since it very little that is applied. But since you say you have other symptoms resulting from low testosterone that the injections are also helping, it makes sense what you are doing.

Like you, have also found addressing MGD/dry eyes from the inside out was key. After unblocking my glands several times with probing and experimenting with different diet changes each time, I found the right things to consume to change my oils from thick to flowing. It was a major turnaround for me, and my preference is treating health conditions naturally, so this worked well for me.

However, I do use Ocusoft Plus Lidscrub Foam in the morning and night, and notice my eyes feel a little drier when I don't use it. I also use a couple drops of artificial tears in my scleral lenses with the saline before inserting them, which make the lenses more comfortable. So topical/external treatments like this are also beneficial for me.

There are foods that naturally help boost testosterone. Perhaps something you may want to try at some point.

https://www.msn.com/en-us/health/nut...A9jB1V#image=1

[Roderick]

I now stopped the Lotemax for three days. I notice generally more inflammation of course, but I do think it had some irritant aspect to it that is now gone. In the end although I miss its soothing effect, I knew its use could only ever be temporary and I am better without it.

One of my greatest areas of concern is that when I wake up in the morning, my eyelids are usually very inflamed and my eyes feel dry.

Every morning, I have been instructed by my eye clinic to clean the lower part of my inner eyelid with a q-tip and a saline solution, and I can see the redness in the blood vessels. It does seem less than it used to be, but I am wondering if it could be slowing my recovery.

Hence, I have ordered some EyeSeals glasses to keep more moisture in at night. I had some cotton sleeping mask, I think, but it wasn't that comfortable, was often dislodged as I moved when sleeping, and didn't do that much. It was useful to a point when I traveled for long by plane or by bus, but for sleeping, I've found it didn't help so much.

My wife is actually a Filipina. So it means we traveled a lot in the last few years to visit her family, and get married in her country. Every time, it entailed crossing the Pacific back and forth, and staying in hotels and malls with A/C for most of the day, as protection against the unbearable heat.

The last time I went there, my eyes had already started to worsen significantly. I actually felt well there. I think part of it is due to the humidity of the air coming from the surrounding seas (as the Philippines is made out of many small islands).

However, when I went back to Canada, I found my eyes to be really inflamed, and worsening significantly every day, eventually becoming unbearable, and compelling me to seek further treatment.

I might try to order the Ocusoft Plus just to see how my lids handle it.

One thing I can say is that all these years later, I am older, more composed, and more knowledgeable, so I am prone to be far less anguished about my condition and about bearing with eye pain than I used to be. Also, I am stunned that in only seven years, it seems that the science of treating dry eye progressed so much, and seems to be taken much more seriously.

[Hokucat]

Yes, I agree age and experience can help, for me especially being methodical and approaching this condition by doing a lot of research, documentation, coordination, and often questioning doctors if I didn't agree or had ideas for treatment (in a nice way)...similar to what I did at work as a consultant and in management. However, the several years my eyes were really bad was still the worst period of my life.

I am amazed in the almost two years I've been better that so many new treatments have been introduced, and previously difficult-to-get treatments have become more mainstream. So I have hope many more people will be able to get better sooner than it took people like me.

FYI, the Ocusoft Plus Foam version was much more effective for me than the Wipes version. I was originally using the wipes, but my probe doctor said the foam worked better for most, and that was indeed the case for me. Of course, go with whatever works best for you.

[Roderick]

Yes, I ordered the foam version.

Do you apply it on your lids with a qtip?

TBH, I think the real reason things have been progressing so much is due to the LASIK, and long term dry eye being a much more frequent consequence of such an operation than what is reported, and much more grave as well.

So in a senses, the ones who ruined people's lives are now selling them the remedy, effectively double dipping. So it is disheartening in a sense.

[Hokucat]

Yes Roderick, use a qtip. I apply it in a horizontal motion back and forth on my eyelid margins, per my probe doctor this methodology is important. The Ocusoft instructions say you can leave it on the margins without rinsing it, but I rinse my eyes afterwards with preservative-free saline, especially in the mornings since I put my sclerals on soon after, because I had noticed the residual from the Ocusoft made my sclerals a little uncomfortable. And when one has dry eyes, sometimes all these eye products can cause further irritation in general.

In another post, someone had mentioned it seemed doctors who did LASIK were also the ones offering dry eye treatments, and he seemed bothered by this. So sounds like others share your thoughts!

[PhoenixEyes]

I simply don't see, as I indeed have very low testosterone, why I wouldn't fix the testosterone deficiency in the blood, rather than taking drops of it to my eyes.

Sorry, I didn't mean to do it instead of the other treatment for low testosterone etc. Just maybe in addition if you feel the eyelids aren't getting the full benefit after an extended period. But I would probably try the cream topically on closed eyelid before the eye drops.

Someone in Canada mentioned trying testosterone cream so may still be an option. Another mentioned getting their ophthalmologist in Canada to write a prescription for it from Leiter's.

But no need to rock the boat at the moment, best to see how things pan out with your other efforts. Hormones can be potent so best to take it slow than mess with too many things at once.

I use Hylo-Forte 0.2% a lot, sorry to hear it burned for you but glad you have an alternative. I wish we had I-drop pur 0.3% here to try. Someone on the Facebook groups mentioned a new Hydrasense range in Canada by Bayer. It has a 0.4% preservative and phosphate free option.

http://www.dryeyezone.com/talk/forum...uronate-canada

[Roderick]

Yes, Bayer has been promoting this a lot in Canada. I see these drops in all drugstores and they all seem to have a special section, and there have even been commercials on TVs. It seems like Bayer's answer to Hylo, actually (Hylo drops are also made by a German company). Like their formula, their drop is also phosphate-free.

But what is interesting is that I-Med Pharma, the Montreal company behind I-Drop Pur, is actually the first company to have had a commercially available eye drop with sodium hyaluronate in it, all the way back to 1989 (well before these sorts of eye drops became popular in Europe). They also say that their is the only "viscoadaptive hyaluronate drop", for whatever this means.

Unfortunately, I won't try their gel drop, because as I stated in the initial posts, I like no gel-based drops (they all make the blood vessels underneath my eyelids sting more). I might try their regular one though.

I can only buy the I-Drop from eye professionals, but they are not expensive (roughly $23 a bottle).

And the company distributing Hylo in Canada is really taking advantage of consumers, these prices are absolutely ridiculous compared to the rock bottom prices they are sold at all across Europe.They are not even giving us the Forte version either.